Thursday, November 1, 2012

Nov 1st. Officially the day after the 31 for 21 challenge. I didn't get to blog the whole month as I've done previous, so I thought I'd try and catch up while I can. I want to tell you that this last month was a good month. For October the last couple of years both Maya and I have gotten sick with colds and allergies. This October we both did really well. As for writing the 31 days for 21, well I did miss a few days here and there. It's the way it is now. Maya keeps me busy as ever.

I'm always thankful for those moms that can write on their blog everyday. It keeps the story going. It keeps us connected. So I'm hoping that I don't drop off the blogging scene too much like I did the last year. I'm hoping to keep anyone who reads this, no matter how few, connected to Maya. After all I started this blog for our family and friends who wanted to know how she was doing.

For all my friends and family that know about our little Step Up for Down Syndrome walk in October (formally called the buddy walk), you know many of us work to raise money for our local organization. We walk in the ASU homecoming parade and show our pride in people that have Down syndrome. It's a great way to bring awareness. This year Maya's Dream team had 17 people walking the parade with her. It was so wonderful to have them join us.

Last year Maya had some struggles at the walk, but this year she did so much better. Despite the noise and all the distractions, she didn't reach her breaking point. Christina, Maya's respite/hab provider was there to support her. She came on her own and brought a friend. It really brought out the best in Maya. I've said it before Maya and Christina have this little sister, big sister thing going on. She can encourage Maya in ways that no one else can. Even though Maya was in sensory overload she worked through it and we were able to walk the entire parade with our team. We even stayed after and watched the rest of the parade.

I'll say it again and and again. I am so grateful for all the support my friends and family give me. Whether it's to come out once a year to walk with us, have play dates with Maya or just give a little money to the Down Syndrome Network, it means so much. It means that they see Maya for who she is, a fun little girl, my daughter, a person who happens to have Down syndrome. They support me on this journey in ways that I can not even describe. I am very blessed.

Wednesday, October 31, 2012

Tuesday, October 30, 2012

It was a busy weekend so I'm catching up on the last few days. Here's what I wanted to write for Day 26. Our first school field trip of the year. The annual pumpkin patch. This year Maya's Dada was able to come with us. Maya was so excited to have him there. Usually field trips are a major challenge. But the last year Maya did really well at the pumpkin patch. This year it was even better. Maya was quite the independent girl. She enjoyed the hay ride, the maze and decorating her pumpkin. Then she was done! That's my girl. When she's done, she's done.

Thursday, October 25, 2012

Today I stuck to my guns and didn't pick up Maya and carry her in my arms after school. This may seem like a small task, or you may ask, why can't you carry her? 99% of the kids walk to and from school (to the parking lot or the bus). But Maya for what reason I have no idea, doesn't do that. She stands in front of me and now she says "up". If I don't pick her up she grabs my dress, she tugs, she sits on her bum and won't move. And during the hot months, it's torture to stand there in 100 degree weather, trying to get her to walk with me.

The weather was manageable today. I figure might as well start now. She is on the verge of being 4 1/2 soon...33 pounds of dead weight and the most wiggly little monster in the world. It's becoming more and more work to carry her around these days.

How long does it take Maya to walk from school to the car? Well let's review: first stop, even before we get out of the school gate, she has to stop at the wagon, and try and play with it. I play, "ready, get set, go!" with her, that usually works a couple of times. Once we are out the gate the sidewalk fun begins. I try and entice her, telling her, let's follow your classmates. She sits on the ground. Usually a very good tactic since at 90 degrees I'm ready to run for shade. Today it was pleasant and I was determined....so I just stood there. Encouraging her as much as I could, telling her she could do it. "You wanna hold my hand?" Um, no way! She's too independent. Ha ha! We get to the entrance sign at the parking lot. We are almost there I say. Of course she has to read the letters on the sign, a game we played last year. Then she takes another rest. I wait patiently. She gets up and turns to look at the parked bikes. Ok down the curb to the parking lot that was a big step. She sees more letters, opps, I forgot about that. Ironically it says no parking on the ground, and soon she's sitting and proceeds to lay down trying to take her backpack off. Finally I take the backpack and pretend to start running. She runs after me. Yes! We are at the car. I feel like I've just completed the most difficult task of my day. That is getting a four year old to do what you want them to do.

Wednesday, October 24, 2012

Tuesday, October 23, 2012

Maya's been using her magnadoddle a lot lately. She been scribbling on it, making marks here and there, dots, etc. Today I caught a glimpse of something beautiful. It was a drawing. A real drawing. Maya made it all by herself. It is the first time that I've seen her work really look like something. It was Mat man.

Who is Mat man you ask? He's a figure that is created with wood pieces and other parts. It's part of the Hand writing without tears program. You sing a song and you put the pieces together.

"Mat man has one head, one head, One head so that he can think...
Mat man has two eyes, two eyes, two eyes so that he can see...
Mat man has one nose, one nose, one nose so that he can smell..."

And on and on goes the song. By creating the parts one at a time and singing the song Maya is starting to understand parts of the body. After you create Mat man with the wood pieces, you can draw Mat Man, singing the same song.

Maya's OT has been using this technique in the last few sessions. Last week she showed me the first time that Maya tried to draw Mat man on her own.

Today Maya drew Mat man without any prompts. She was just standing there drawing. I was so lucky to see it. Because she usually erases everything right after she draws it. So who knows how many mat man's she has sketched before I saw that one. This is a huge milestone! What is most wonderful about it is that even though we have been working on her pre-writing skills, I was not expecting her to draw Mat Man so soon. This is so encouraging. I'm looking forward to doing more work with the Handwriting without Tears program for certain.

Monday, October 22, 2012

Today. Different than other Mondays.
Maya walked from the car to school when I dropped her off.
Dada came to pick her up from school. She held our hands and walked the whole way.
No therapies to go to today.
Maya and I, free to do whatever we want.
No where we needed to be.
We shopped. Maya got cool new shoes and so did Mama.
We ate. Grilled cheese sandwich and salad.
In the Disney store a new friend came home with us, Gonzo.
It was the best Monday in a long time.

Sunday, October 21, 2012

It was good to see Maya playing with her friends. It's still parallel play, but it's getting closer to actively playing with each other. This time when T and G started playing with the doctor set. Maya sat down and also wanted to play. With a little coaching she started to check Jessie's heart with the stethoscope.

Then T brought out the Break the Ice game. One of Maya's favorites. They all helped me set it up by handing me the ice cubes. Ironically this process usually takes longer to put together than actually playing the game. When it came time to play, they did it so well. They took turns and even shared one of the mallets.

When we went outside, the kids played on the little slide and ran around the yard. We changed the level of the slide so Maya was hesitate to go up it, but she did with some help. She also enjoyed watching her friends go up and down the slide. Maya, T and Christina pretended to be airplanes, soaring through the grass. That was a precious moment.

These are the little things in life that I appreciate more than anything. From the time she started to crawl, I've tried to have Maya interact with her peer, Whether in playgroups, classes, or story time. Sometimes it feels like a struggle because the level she is at is not the same as others her age or even younger. It takes time to get her there. It's a daily challenge, something that others might not realize. Whether it's walking, jumping, how to hold a crayon, or learning how to appropriately play with her friends...it take effort. But always the reward is worth it. When I think about the way I am raising Maya, I think it's exactly the way it is supposed to be. It is hard work to bring up any child, and yes, it take a wee bit more effort to do it for someone with special needs. I don't think that it would be much different than if she didn't have Down syndrome though. We all want the same things for our children. Among love and happiness we want them to be the best person they can be. This is all of our goals in the end.

Thursday, October 18, 2012

We had an awesome play date with some friends yesterday. It's so nice to see Maya playing with her peers. After a while we went to the pumpkin patch down the street. It's our favorite pumpkin patch because it's quiet and free. The kids loved it. They actually entertained themselves really well. This year Maya was really into the pumpkins. Next week we are taking a field trip with the school to another pumpkin patch. Even though Maya hates field trips, that one Maya does pretty good with. I'm looking forward to seeing how she does this year.

Wednesday, October 17, 2012

Tuesday, October 16, 2012

Every Tuesday I pick up Maya from school. I have to take her out a little early so she can attend her occupational therapy. Usually we all drop our kids off from the outside for school, so when I pick her up early I get to walk inside the school. A place I only see once a week. As I walked the hallway in the school to her classroom, I noticed the wall had some decorations. There was Maya or at least a picture of her head pasted to an outline of a baker, on the wall.

I remembered that the week before fall break there was a lesson about cooking/baking. The class made a couple of projects, one was a chef hat and the other was decorating and eating cookies. The teacher had mentioned to me that Maya really enjoyed pretending to be a baker.

It was nice to see Maya's project hanging with the rest of the class. And to see how she colored her page. I think she's come a long way with her coloring. She is still trying to eat the crayons, but every day her interest in coloring gets a little bit longer.

On a similar note I've noticed in the last few weeks that Maya has been gravitating towards using her magnidoddle. She scribbles "pictures" or maybe she is "writing" stories. She sits and draws and draws for quite a while (for Maya). She is practicing holding the pen in a tri-pod grasp. It's good to see this stage. I noticed she leans towards markers, pens or brushes, perhaps crayons are just not her medium of choice. I just love watching her develop into her own person.

In December 1960, Marjorie Sullivan Lee's sixth child was born. After
five other children, Marjorie and her husband, John, were used to the
routine. But what made this time different from the rest was the
diagnosis given by their pediatrician the day after Kevin was born —
their son had Down syndrome.

The doctor explained their options, which at the time meant telling
Sullivan Lee she could send her son away. She immediately told the
doctor, “No.”

This experience, along with others involving her son, Kevin, is
described in the book “Bloom Where You Are Planted,” which published
this year.

Through this book, Sullivan Lee has been able to share the message that
"life with Down syndrome is OK" with parents of children with Down
syndrome and those in the community.

“I want to help others learn that people with cognitive disabilities
want to be a part of — rather than apart from — the rest of the
community,” she said.

And Sullivan Lee has spent the last five decades searching for this inclusion both in the educational system and the community.

Kevin went to a school for people with disabilities away from his
neighborhood until he was 17, despite efforts by Sullivan Lee and her
husband to keep him closer to home.

The Education for All Handicapped Children Act — the predecessor of the
Individuals with Disabilities Education Act, or IDEA — was passed in
1975 and required that children with disabilities be educated alongside
peers without disabilities whenever possible, as long as that
environment could provide the education they needed.

Based on this new law, Sullivan Lee and her husband initiated a due
process procedure that won Kevin the right to be educated in his own
neighborhood school with peers who were not disabled.
Kevin was the first person with Down syndrome to graduate from Glenbard East High School in Lombard.

Sullivan Lee then helped found the Parents Alliance Employment Project,
which partnered with what is now called the workNet DuPage Career
Center to provide credits for employers who hire people with
disabilities, creating a way for people with disabilities to get
“normal” employment.

Kevin has a volunteer job shredding documents at a government office,
which he has been doing for about 20 years. He also takes physical
education and individualized reading courses at the College of DuPage.

Even with the improvements Sullivan Lee has seen and fought for during
her time, she said not all problems in the educational system and
community have been answered; there still are areas in need of
improvement and advocacy.

She wants parents of children with Down syndrome to know their loved
ones can have a “very nice, happy, comfortable life while living with
Down syndrome,” something Kevin has shown throughout his own life.

And just as his mom has enjoyed life with him, Kevin has enjoyed life with his mom.

Kevin said he is proud of the book his mom wrote for him, a book that’s
described on the cover as “a story of family love for a special
person.”

In December 1960, Marjorie Sullivan Lee's sixth child was born. After
five other children, Marjorie and her husband, John, were used to the
routine. But what made this time different from the rest was the
diagnosis given by their pediatrician the day after Kevin was born —
their son had Down syndrome.

The doctor explained their options, which at the time meant telling
Sullivan Lee she could send her son away. She immediately told the
doctor, “No.”

This experience, along with others involving her son, Kevin, is
described in the book “Bloom Where You Are Planted,” which published
this year.

Through this book, Sullivan Lee has been able to share the message that
"life with Down syndrome is OK" with parents of children with Down
syndrome and those in the community.

“I want to help others learn that people with cognitive disabilities
want to be a part of — rather than apart from — the rest of the
community,” she said.

And Sullivan Lee has spent the last five decades searching for this inclusion both in the educational system and the community.

Kevin went to a school for people with disabilities away from his
neighborhood until he was 17, despite efforts by Sullivan Lee and her
husband to keep him closer to home.

The Education for All Handicapped Children Act — the predecessor of the
Individuals with Disabilities Education Act, or IDEA — was passed in
1975 and required that children with disabilities be educated alongside
peers without disabilities whenever possible, as long as that
environment could provide the education they needed.

Based on this new law, Sullivan Lee and her husband initiated a due
process procedure that won Kevin the right to be educated in his own
neighborhood school with peers who were not disabled.
Kevin was the first person with Down syndrome to graduate from Glenbard East High School in Lombard.

Sullivan Lee then helped found the Parents Alliance Employment Project,
which partnered with what is now called the workNet DuPage Career
Center to provide credits for employers who hire people with
disabilities, creating a way for people with disabilities to get
“normal” employment.

Kevin has a volunteer job shredding documents at a government office,
which he has been doing for about 20 years. He also takes physical
education and individualized reading courses at the College of DuPage.

Even with the improvements Sullivan Lee has seen and fought for during
her time, she said not all problems in the educational system and
community have been answered; there still are areas in need of
improvement and advocacy.

She wants parents of children with Down syndrome to know their loved
ones can have a “very nice, happy, comfortable life while living with
Down syndrome,” something Kevin has shown throughout his own life.

And just as his mom has enjoyed life with him, Kevin has enjoyed life with his mom.

Kevin said he is proud of the book his mom wrote for him, a book that’s
described on the cover as “a story of family love for a special
person.”

Friday, October 12, 2012

That's right she says ice cream in her cute little voice. When I ask her if she wants it, she says, "kay". She signs it and I say, use your voice. Then she says it. Wow. So I sing to her, I make up a song, I say, now it's your turn. She sings it right back. Not the words so much but the right rhythm, I still hear the end of it when she says, "ice cream".

Thursday, October 11, 2012

Remember I told you that Maya did so well at her friend's birthday party this last weekend. Well I can't help but post a few photos from that party. They aren't great because they are from my phone. They do however capture how engaged Maya was in the party. She followed directions and tried to do the obstacle course as well as other activities. She didn't just dance around on her own like she likes to do (they did have good music playing). As she gets older I am enjoying the things that other parents might already take for granted. She doesn't need me right by her side every second to direct her. She watches others and sees what they are doing. She tries to follow them the best way she can.

Tuesday, October 9, 2012

A few weeks ago Maya discovered a new play space. It's always been there but for some reason she's never been that interested in it. One day she dumped her dolls in there. Then she wanted to go after them. That's become her new favorite place to hang out. She actually stays there for a long time (in Maya terms). When I watch her, I pretend like I can see her thoughts. When she talks to her dollies, when she makes them dance or hugs them. I hear her making up stories and pretending. It's magical to see her play in this way.

Monday, October 8, 2012

This is literally a miracle. Let me tell you why, Maya does not like to walk. OK maybe that is an exaggeration. Mostly she doesn't like to walk where you want her to walk. She only goes where she wants. Kinda sounds like a diva, doesn't it?! Ha!

On a more serious note, I'm not sure if it's that she is unsure of the uneven surface she is walking on or if she is distracted by all the things around her. Sometimes she dilly dallys by exploring everything on the ground and other times she just looks at me straight away and says, "up". If I try and ignore her or encourage her to walk, she stands in front of me every step I take and won't let me pass. Whether it's to go to school, her therapies, or the gym. She wants to be carried. Of course this is something we are working on. But it's been very slow going.

So you can imagine my surprise when she wiggled out of the my arms and started walking to the therapy building, today. There were a few stops here and there, mostly to do a little dance and look at her shadow on the ground. But she did it, she walked from the car, the parking lot, hallways, into the elevator and to her therapy room.

I took a bunch of photos because I was so excited. Excuse the blurriness. Oh and yes today she wanted to wear her Halloween costume again. She found it in her closet, even though I was trying to hide it. Guess she found a new favorite dress.

Sunday, October 7, 2012

Opps, my bad. I missed one day of blogging already. Rats! Oh well not much I can do about it now.

Day 7 of 31.

It was a busy and fun weekend. The usual craziness happened. Get togethers, shopping, working out, eating great food and a birthday party.

Birthday parties seem to put me on edge a little. Mostly because I never know how Maya will do at the party. Today was awesome. It really gave me happiness to see that she was really enjoying the activities at the party. She was engaged and followed directions so well. It really put things in perspective for me. I had a chance to sit back and watch her this time, since Dada was there to help. Usually I'm so close to her, almost to the point that I don't see her growing in front of me. I get a different view because I sit next to her all the time. It's good for me to step back, literally, to be able to see Maya as a whole person. She is looking older, she is growing and although I know she is making strides towards her goals, I don't always see how much she has changed.

It was a good birthday party. Aside from her being upset when they yelled "Happy Birthday", and the scrap she got from a fall. She even ate her pizza slice while sitting with all the other kids. Of course Maya doesn't like the birthday song or cake. So Dada took her out before that happened. I think it was a good plan. The party ended with a positive thought in her head.

After the party we went to Costco for a few things. While we were there I stumbled upon the Halloween costumes. I was so excited when I saw the cheerleader outfit. Everyone lately has been asking me what Maya is going to be this year. Unlike a lot of children her age, she's not really into any character in particular. So I wasn't sure what she'd like to wear. Usually she just wears whatever I put on her for Halloween. Not ever has she complained about the outfit. This year I was wondering if she would care or not. So when I held out the two cheerleading outfits, one blue and one red, I was so happy when she immediately smiled and pointed to the red one. I asked, "You want the red one?" and she said, "Kay!" She was as excited as I was about the find.

When we got home I put the outfit on the couch and she immediately saw it and brought it to me. She was signalling that she wanted it on. From then on she was wearing the little outfit and playing with the matching pom poms. I taught her how to do a cheer. Although I'm sure she has seen it on The fresh beat band show. The whole afternoon she kept going to her favorite mirror spot and doing her cheers.

Others have told me this is a fun age for our kids, they are little sponges. I really see this is true. Maya takes a lot of info in. Even if she doesn't look like it at the beginning. She gets it. Then she shows you her interpretation. I wasn't sure if she was getting the idea of cheering, but then I saw her doing it in her own style. She knew exactly what she was supposed to do.

Now I can't wait for Halloween. It will be interesting to see how she does with the trick or treating. Like I said, every year gets better and better. What a great adventure to be on.

Friday, October 5, 2012

A quick snippet from our Cali trip. I thought this was such a cute photo. It's not the greatest because I was using my phone. Here we are on our road trip. K and A are riding with us to Angel Island. All three of them are in their own worlds. K is listening to music, Maya is reading the wiggles coloring book and A is using the ipad, they are enjoying the road trip in their own way. I love this photo because Maya looks so grown up. It almost seems like she is an older person reading the newspaper. She spent a lot of time looking at all the drawings in that coloring book. Of course not any of the time was spent actually coloring it.

Thursday, October 4, 2012

Every year we go to California to visit family/friends. We even took Maya as early as six months old. The first time was in a car. That was brutal. Since then we have flown. Every year keeps getting better. Maya's always been a good traveler. She does well on the airplane, thanks to my ipad, and she doesn't mind change in scenery or routine, too much.

Maya loves her cousins dearly. I think part of that is that they pay so much attention to her and are willing to do pretty much anything to make her smile. Our family friends adore her and luckily their dogs don't mind Maya too much. Of course Maya loves doggies, but I noticed lately she thinks those dogs are horses. The last two years instead of signing dog, like she did previous, she signs horse. I think that is hilarious.

So this year we took a little road trip with the family. We went to Angel Island for a day. The weather was perfect, and we had a chance to do some hiking on the island. For Maya the best part was hands down the ferry ride to the island. She loved the wind blowing in her face. The entire time she had a smile from ear to ear. It was such a joy to see.

We went the next day up to the Russian River. It was no surprise
that Maya wanted to get into the water. It was a little cold but she
enjoyed playing in the water. We spent a while there and even had a little
lunch on the beach. During that time we spent most of the time with Maya's cousin.
It seemed she was Maya's new best friend. In my husband's culture they
always refer to their cousins as brother or sister, never do they really
use a word that means cousin. This is different then the way I was
brought up, but it feels right for Maya and her cousin. They really are like sisters.

insight on...

artist, photographer, cook who likes to eat out a lot, music and wine lover...current status: SaHAM (stay at home advocate mom) to our cutie pie daughter who happens to have an extra chromosome.
“The best and most beautiful things in
the world cannot be seen or even touched.
They must be felt with the heart.”
-Helen Keller